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Thread: 10th year anniversary of SCI - 3,650 consecutive days of pain

  1. #1

    10th year anniversary of SCI - 3,650 consecutive days of pain

    Yesterday, I celebrated my 10th year anniversary of SCI. I took it hard for one reason. It symbolized and brought me to the realization that there has been so much pain, daily pain that makes getting through each 24 hrs a huge challenge/ a recurrent daymare. Not one in 3650 days has ended well and peacefully. It has been a repeated Ground Hog day, full on crisis ending each evening with the hope that sleep, with the aid of ambien, will overcome my crescendo of suffering quickly and the dawn will bring new hope. I start pushing that large Sisyphean boulder up the hill the next day. This is the baseline which has been punctuated by 12 substantial physical setbacks with 3 revision spine surgeries, months in the hospital taking years to recover from and hallmarked with six abdominal laparotomies from small bowel intestinal obstruction and lysis of adhesions losing all physical conditioning and leaving the hospital on high level of opiates to withdraw from. Then the Sisyphean climb up the conditioning ladder only to fall again. These are have been the exclamation points on a baseline of chronic daily neuropathic pain that still defies control despite all the talk and advice I have offered to others here. That I do because it helps me to help other people – it is self serving. I am taking my moderator hat off tonight and just letting the world know what it has been like for me and I know that many here are in the same boat. I have nothing to hide, the past 3,650 days have brought a great amount of humility to my attitude.
    Although there have been no fully good days, there have been good moments – while enjoying family, nordic sitskiing, monskiing, handcycling ,now working full time at SSDI, watching a sunrise, and of course music - western classical music from 1750 to 1945.

    There have been some good moments, but in summation I am so beat down from the chronic pain and all the meds to manage it that I am not in a celebratory mood.

    I apologize for the downer but realistic post and I hope this is rare for me. Maybe I will write something like this on my 20th anniversary. I am sorry if I am spoiling the hope that newer injuries may have – you may have a different experience. I don’t need condolences, and I am grateful for the people I believe I know here at CC (even though all is uncertain on the Internet) who have helped me retain my sanity and humanity.

  2. #2
    I am sorry for your pain. You can take some solace in the fact you help a lot of us deal with ours with your works and example. Here is to those moments that keep us going. Cheers.

  3. #3
    Senior Member lynnifer's Avatar
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    It does get easier to accept and physically deal with for a while .. until I hit 35yrs old (22yrs of paralysis by then). It gets more difficult each year. I will hit 27yrs of paralysis out of 39yrs of life by the summer.

    Can't sugar coat it and you haven't. It's refreshing, FOR ME, to read what I feel as well. I endeavour the same motivations as you for sticking around CareCure. Plus I get so much back - like your post.

    You motivate me to keep going.

    I know PLENTY around here that will say exactly what you have and it's only your tenth anniversary ... kudos to you for hanging on and hanging in.

    Hope you treated yourself. The rounder numbers - 10, 15, 20, 25 and I expect 30 to be harder to deal than the others.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  4. #4
    Senior Member
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    Let me second the posts of T8burst and lynnifer. I have been having some of the same feelings as I approach my 5th year anniversary and also as I watch my 81 year old father try to recover from his C 5/6 cord compression due to spinal stenosis.

    To some extent now are lives are being defined by our ability to persevere and adapt and the example we set for those close to us. I know you are setting a great example for your child (son, I think) and that he (or she) will greatly benefit from your example.
    2012 SCINetUSA Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  5. #5
    I just entered this game so all I can say is that the short time I've been here your posts have always inspired and motivated me. I think your a great example on how to battle this crap head on and get the most you can out of life. Thanks

  6. #6
    I hear you arndog. I have nothing but admiration and respect for all of you who are managing to hang in there for years.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  7. #7
    Thank you for helping me.


    For you....

    http://www.youtube.com/watch?feature...unzGnyLjA#t=0s


    And if you give a passionate Russian cellist Bach to play, it can sound like it was written after 1750.....

    http://www.youtube.com/watch?list=PL...FrEJK7oAg#t=0s


    I'm so sorry you are suffering.
    Last edited by hlh; 02-23-2012 at 11:23 PM.

  8. #8
    Your post is not a downer arndog. Sugarcoating is overrated.
    I have read your very sincere and well articulated posts to my husband in the past and it helps him to know he is not crazy with the puzzling and bizzare pain.
    Even though I never doubt him, hearing from others helps me advocate for him and know we are doing everything we can.
    I'm glad you are here and telling it like it is, yet also living your life very fully.

  9. #9
    Hang in there Jon. I'm sincerely sorry for the pain you suffer, but grateful for your contributions here.

  10. #10
    Thanks for your kind remarks, Lynnifer - you are coming up to a big anniversary of 30 years and with all that you have been through, you inspire me. You are a survivor with great strength and will.
    Thanks HLH for Op 131 - to beautiful to believe that someone could write that. Thank you Ludwig for enriching my life - no one speaks to me as his work does.
    Very soulful rendition of the Bach cello suite.
    I am excited that this upcoming Saturday, I am going to hear Dimitri Adapine play all 5 Beethoven Cello Sonatas in one concert.
    Before I die, I need to hear the Beethoven String Quartet cycle maybe over 3 days... - does anyone do this anymore?
    HLH - thanks for your friendship and best to your dad.

    SWH, LindaT, Dave, SCI for 55 ,lonecoaster- thanks for your kind thoughts.
    I cringe to post any non hopeful post but I didn't embellish or exaggerate my story and I called it like it is. It is what it is and I keep going at it. I know I am incomplete and I can get out of my wheelchair and use crutches and some can not do this. But the chronic pain is brutal. It is just the idea of 10 years of this that gets me.
    I got my whinefest out of my system without out the added calories of drinking wine.

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